Tuesday, March 10, 2009

Recruitment has begun

The recruitment for the Phase IIb random control trial has started: check out the StutteringStudy website. Indevus in a joint venture with Teva will test Pagoclone as a stuttering medication. I have extensively posted on the issue: here It took a very long time until Indevus found a partner, but finally they made it.

All US residents satisfying certain requirements can participate in the trial. Take the pre-screening test here.

If I were to live in the US, I would participate in the trial. First, I would help the researchers to get enough people together to make statistically valid statement, and thereby furthering our understanding of stuttering. Second, it is for free and probably all expenses paid! Third, it is a large scale trial so they have to adhere to high (safety) standards. Fourth, I am curious whether I experience a fluency effect.

Do not take the trial, if you are desperate for a complete cure. It will not happen. At best, you will see a significant decrease in stuttering which enables you to control your stuttering better and say what you really want to say. Do not take the trial, if you choose not to tell them about some medication or condition in fear of not being able to participate, you will distort the results and harm everyone. Do not take the trial, if you cannot handle the fact that after the trial you might not be able to continue on the medication. Do not take the trial, if you cannot handle that you might not see any fluency gains.

Finally, consistent with my image, I also need to be a bit critical! I object to their marketing pictures on the brochure to make potential participants happy. They are fake artificial pictures of a group of humans. They are all slim, beautiful, well-groomed, smiling, white-painted teeth and of course carefully counted for race balance to give the illusion of racial unity. But the website on the other hand is kept very neutral.

10 comments:

I actually received an email with an attached pdf file describing the clinical trial from the research center nearest to me, asking whether I would like to participate.

I submitted my information a long time ago on the Indevus site, so this is where they received my information from.

That being said, I think I may just give it a shot. I don't know if I will qualify or not, as my stuttering is more block based (like not being able to get out a word, that can't be substituted, such as my last name), and most of the time doesn't appear as if I stutter at all. Even so, I may attempt to enroll. I'll give it a thought for a day and see if I want to try to qualify.

At the very least, if I am accepted, I will be able to provide first hand experience from the test, followed by the phase II open label study.

From article: "definitely seems to have had extensive schooling in theoretical physics..."

Both Tom Weidig and Theodore/Ted Kaczynski were good in math and saw unjust in the world...both are hiding in a way (Ted hermit in Montana and Tom in Lux castle)

Please: how about some solutions? Fuzzy answers okay. Science is about making progress, baby steps. Rome not built in one day. People are trying....and some smart people are really trying to help Stuttering...

1- stutter myself.2- attended therapies and self-help groups3- trustee at the British Stammering Association4- 10 year long debates with therapists and researchers5- I am the info hub No 1 due to my blog and everyone telling my news6- I read extensively on neuroscience and actually taking university courses in the field.

and finally

7- I have a rigorous science background from top universities.

That's why. And I say it again. Progress is also pointing out that solutions are not actually solutions.

And no science is not about baby steps of progress. Many steps are actually missteps that need to be outed, especially in social and medical research!

You actually provide good information most of the time. I wonder if you have a bias against stutterers (you say stutterers who do research are biased). Is this is what you believe? Then you are biased too...

You said: 4- 10 year long debates with therapists and researchers

6- I read extensively on neuroscience and actually taking university courses in the field.

Ok, when will you get your MS or PhD in Neuroscience? And which University?

More importantly, who are the researchers and therapists that you debated with in the past?

If the debates b/w you and the Lidcombe people were judged, you would have LOST, correct? Only 1% of the people agree with you.

(We just don't know if you are taken seriously at all in the Stuttering research community??)

For example, Greg (semi-serious stuttering researcher is making fun of you) pays attention to your blog, but who else?

Who knows if people are laughing at you behind your back....

I think you want your blog to have a bigger impact over time, right? Respect = impact. Keep up the good work!

"Progress is also pointing out that solutions are not actually solutions.

And no science is not about baby steps of progress. Many steps are actually missteps that need to be outed, especially in social and medical research!"

I agree with you about science. Science is an evolutionary process where each new discovery builds on what has been discovered in the past. It is a journey, but the destination is unknown. But sometimes the path goes in the wrong direction and it can take years to weed out the "missteps" (as you call them). In my view, one of the biggest problems is the training of SLPs. What should an SLP be taught? Should an SLP have training in basic neuroscience, or are they just required to administer treatments and therapies without really understanding the conditions they treat? If it's the latter, then they really have no business being involved in stuttering research. Yet people like Sue Block and Mark Onslow (who are both SLPs) are the main drivers in Australian stuttering research.

Take a look at the "Masters of Speech Pathology" course at Latrobe University in Melbourne:http://www.latrobe.edu.au/handbook/2009/postgraduate/health-sciences/coursework/hmsp.htmThe prerequisite for entry into this course is a degree of any kind. You can have a degree in Ancient History, enter this course, and 2 years later you're an SLP, qualified to treat stutterers. Take a look at the course content and each of the subjects. Stuttering is not even mentioned. It's no wonder that the progress in stuttering research is stunted.

I was chosen for the Pagaclone study. I live in the Boston area, and have stuttered my whole life. I start paga April 30th, I obviously don't know if I will get the placebo, but I am guaranteed a least a shot at the real deal after the study. This study is predominantly about dosages so the woman at the trial center said there may not be very many placebo patients but dosages will range.

I will let you know how it works. Is there anywhere else to post? I remember I wanted to know second hand from an actual patient how effective the drug was during phase 1 and 2a. I did find one guy who said he no longers stutters and never returned any other emails. I want to keep other informed.